Respectful Insolence

I have a bit of a love-hate relationship with the antivaccine propaganda blog Age of Autism.

The reason for the hate part should be obvious. AoA is, without a doubt, a cesspool of pseudoscience and anti-vaccine propaganda. All while oh-so-self-righteously denying that its agenda is “anti-vaccine,” AoA on a daily basis lays down articles blaming vaccines for autism, while setting up websites attacking vaccine science, taking out full page ads attacking vaccines as causing autism, gloating when learning of declining vaccination rates in the Ukraine, and high-fiving (blogospherically speaking) recently Kim Stagliano learned that Captain Kirk suffered a reaction to a vaccine in the new Star Trek movie. Never mind that it was intentional in order to smuggle Kirk back on the Enterprise after he had been put on academic probation. (Don’t worry, I won’t give away any more of the movie.) Meanwhile, Generation Rescue’s founder and AoA blogger J.B. Handley shows up on other blogs bragging about how antivaccinationists tend to be affluent, well-educated people, and Dan “Sgt. Schultz” Olmsted attacks Bill Gates because his foundation promotes vaccination. With the addition of their useful celebrity idiot Jenny McCarthy, AoA has become a major force in discouraging vaccination and promoting disease.

On the other hand, I like AoA. No, I don’t like what it does or what it writes, and I certainly don’t like its pseudoscience. What I like about it is how, every so often, AoA posts something so unbelievably crazy, disturbing, and horrifying that it lays bare for all to see the utter pseudoscience and cultish beliefs that are at the heart of the antivaccine movement. Most often, it’s Kent Heckenlively who does this to the most hilarious effect. Well, it would be hilarious if it weren’t always in the back of my mind that he is subjecting his autistic daughter to some pretty extreme quackery, as I pointed out when he wrote a post about how he took his daughter to Costa Rica (and even hitting up his daughter’s grandfather for $15,000 to do so) for stem cell quackery. But it was worse than that. This quack injected alleged “stem cells” directly into Heckenlively’s daughter’s cerebrospinal fluid by lumbar puncture. What these posts demonstrate, more than anything to me, is the price of antivaccine fanatacism: parents subjecting their autistic children to all manner of quackery, be it the dietary woo that Jenny McCarthy subjectes her son Evan to or the more extreme case of stem cell quackery. I only wish Oprah had bothered to see some of these posts before signing Jenny McCarthy up for a deal to produce a daytime talk show.

This time around, Kent Heckenlively is at it again, and what he says is so amazingly wrong that it is, as they say, not even wrong. I would laugh at it if it weren’t for the fact that he’s subjecting his autistic daughter to quackery based on his mistaken beliefs. In this post, he’s wondering why, after all the rounds of chelation therapy he’s subjected his daughter to, she still keeps testing high for excreted “toxic” metals. First, he sets the stage:

It’s been said that a parent is only as happy as their least happy child.   That saying should probably be reworked for autism parents.  We will be obsessed to the degree of impairment of our least recovered child.

I’m fortunate that my son Ben had a complete recovery with the quick implementation of the gluten/casein free diet after his 18 month vaccination, but after seven years of bio-medical treatments my daughter Jacqueline is still severely affected with autism and seizures.

Note how it never enters into Mr. Heckenlively’s head that perhaps the reason Jacqueline is still autistic is because the biomedical treatments don’t work. No, he is utterly convinced that they must work, even to the point where he’s willing to keep forking out big bucks to various “biomedical” practitioners over the course of seven years and even go to Costa Rica for stem cell quackery, even as he wonders:

About four years ago I started tracking my daughter’s toxic metal excretions using the Doctor’s Data lab…I’ve got close to 50 of these tests on her and thanks to Jacqueline’s doctor they’ve been charted on graphs.

From the beginning aluminum showed itself to be a problem.  Her excretions have ranged from 8-13 times normal.  In August of 2006 when we were going after strep her aluminum excretion hit a high of 80 times normal.  Her aluminum excretion has ebbed and flowed since that time, but it’s still usually somewhere between 5-10 times normal.  The other metals have also ebbed and flowed, but aluminum has been the most dramatic.

If there’s one thing you should know about Doctor’s Data, it’s that it’s a lab favored by the mercury militia. What it uses are called “provoked” or “stimulated” urine tests, in which an oral chelation drug is administered before urine collection. Not surprisingly, such results always produce high levels of “toxic metals” in the urine, which are normally pretty low. Indeed, labs like DD are integral to the antivaccine autism “biomed” industry. They produce highly unreliable values that have no clinical meaning because they are not baseline values and have been provoked by chelation. The standard manner to measure urine mercury is to collected a non-provoked urine sample over a 24-hour period. Moreover, because most of the extra excretion takes place within a few hours after the chelating agent is administered, using a shorter collection period yields a higher concentration in “provoked” testing. Moroever, DD uses standard values for non-provoked testing as the reference values for provoked testing, which is ridiculous. Provoking with a chelating agent will raise the concentration of metal ions in urine well above these normal reference ranges. Also, DD has been questioned about this. Arthur Allen tried to interview an official at the company, but failed. However, he did manage to talk to one person there and asked him about the reference value problem. The response:

An individual close to the company said there was no way to establish a base line for post-chelation samples, which might have been provoked by any number of different chelating agents, at varying doses. “The tests are ordered by physicians, so they can interpret the results,” this person said. “They do what they want with this information.” But copies of the reports, which chart the child’s mercury levels into deceptively shaded “elevated” and “very elevated” areas, are typically provided to both physicians and patients.

Indeed, Dr. Jim Laidler once tested Doctor’s Data, as described here:

Doctors Data was tested by Dr. Laidler in a way that any parent could do, almost. Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

He sent it to DD and got back 2 different results and both high in mercury.

So, basically, in Mr. Heckenlively’s case, there’s a dubious “provoked” test for metal, whose results have never been shown as far as I can tell to correlate with any disease, condition, or “toxic metal” load, combined with an equally dubious laboratory test. And, as Mr. Heckenlively put it, he is obsessed with these results. After all, he’s done over 50 of them and keeps meticulous graphs, as he tires to correlate anything he can think of with the vagaries of how these levels rise and fall over time. Meanwhile, the autism biomedical industry discourages questioning. When even the ever-gullible Mr. Heckenlively starts wondering why on earth nothing ever seems to change with his daughter’s urine tests if chelation is supposed to be ridding her of all these “toxic” metals that to him are causing her autism:

When I’ve asked her various autism doctors the reason for this continued high toxic metal excretion they tell me to think of my daughter as having a vast, toxic pool inside her which needs to be drained.  Metals sequestered deep in her tissues are now able to be released.  I understand that this explanation may be exactly right.

But something about the explanation seems wrong to me.  Regardless of the amount of metals which she’s retained it seems we should have gotten it out by now.  In addition, for all of the metals she’s excreted over the past years I haven’t seen a corresponding increase in cognitive function.  At the age of eleven she’s still in diapers, her speech is very apraxic, and she still has seizures.

I understand that many DAN doctors claim it’s only when they get near the end of chelation that they see dramatic changes in the kids, but that also raises some additional questions I’ll get to later.

Mr. Heckenlively doesn’t seem to realize that, even if there were a “vast, toxic pool” of metals inside of his daughter that needs to be drained, seven years of more or less continuous chelation therapy should have been more than adequate to drain that pool. It wasn’t because there is no such pool, and Mr. Heckenlively’s data from his own daughter does not support his claim that she is mercury toxic. But poor Mr. Heckenlively so, so, so wants to believe that he’s willing to look for any explanation and swallow anything, no matter how ridiculous. Towards the end of his post, he describes the ideas of one Mark Squibb, whom he describes as “a former engineer who now has a web-site which seeks to promote the latest products and ideas in alternative medicine.” That’s an understatement. Squibb’s website offers woo such as “lipophilic detoxiication,” a “vaccine buffer system,” and “stress detoxification systems,” among other things.

But the woo-iest of his woo-ey ideas is one that Kent Heckenlively likes the best. I have to admit, my jaw really did drop when I read this:

Mark’s theory was fairly easy to grasp, even if it went far beyond what’s currently accepted in scientific thinking.  It was his claim that the metals suppressed the immune system, let various pathogens use them, and then the pathogens themselves were proceeding to make their own supply of toxic metals, leading to oxygen deprivation. 

The bugs are making metals! 

That’s why kids like Jacqueline were having such long periods of chelation and little recovery.  We were taking metals out, but the bugs (viruses, bacteria, fungi, and molds) were making them faster than we were removing them!  We needed to reach a tipping point where we were getting the metals out faster than the bugs were making them.

I didn’t realize that bacteria were alchemists, did you?

I mean, really. This is utter and complete nonsense from a scientific standpoint. Bacteria can’t “make” metals. They can only consume and excrete them, unchanged. For bacteria to “make” metals, they would somehow have to be able to transmute other elements into mercury, lead, or the other metals in DD’s panel. The ignorance of this basic fact is so astounding that it’s frightening to think that Mr. Heckenlively is a science teacher.

But it’s worse than even that:

Mark also claimed the bugs were using the metals, specifically aluminum, to do something which was essential to their survival.  It let them hunt.  Aluminum is used in treating waste water in order to make particles clump together in a process called flocculation.  (Yes, I did ask, what the flock is that?)  By causing the particles to clump together, it’s easier for the bugs to get their food.

This “clumping” would have system-wide effects which could be measured if you knew where to look.  One of the first places to look was blood-pressure.  These kids would tend to have low blood-pressure, even though their pulse rate would be quite high.

A child with a lot of bacteria growing with a high pulse and low blood pressure would have a condition for which there is a name: Sepsis. That would be really, really bad, and it’s unlikely that a child could remain chronically septic for long untreated with antibiotics before becoming floridly septic.

But that’s still not the worst. This is:

Mark went on to say that this clumping would’ve led to what’s known as “micro-strokes” in the small vessels of Jacqueline’s brain and other parts of her body, a theory pioneered by Dr. Andrew Moulden.  In preparing this article I watched Dr. Moulden’s six-hour DVD “Tolerance Lost” about the issue of micro-strokes throughout the body.  The DVD was enlightening and thought-provoking.

I’ve discussed Andrew Moulden before. Suffice it to say that his particular brand of woo is, in my humble opinion, as quacky as a quack’s woo can be. Just because aluminum ions can be used to flocculate particles in industrial settings that the same thing must be happening in the body and causing disease. Truly, a little knowledge is indeed a dangerous thing.

But that’s not all the woo that Squibb has sucked Mr. Heckenlively and, by extension, his daughter into. Heckenlively describes results of live blood cell analysis, which is utter and complete quackery. This result claimed that Jacqueline’s red blood cells were “collapsed” and thus unable to carry oxygen. He’s also into pH woo, as well as measuring the surface tension of Jacqueline’s urine. Why? I have no idea, but Squibb used it to tell Mr. Heckenlively what he wanted someone to acknowledge: That his little girl was sick. Squibb’s woo also provided Mr. Heckenlively with exactly what he wanted to hear: Validation of what he thought about all the quackery to which he’s been subjecting his daughter:

From my own standpoint it’s a plausible explanation for why Jacqueline’s biggest metal pulls have been when we’ve been going after bacteria, fungi, and viruses, as well as why despite getting out lots of toxic metals it still seems like there’s so much more inside her.  I swear, we’re not feeding her aluminum!

Actually, Mr. Heckenlively is. Aluminum is ubiquitous in the environment. Indeed, virtually all food contains some aluminum, and the average adult consumes approximately 7-9 mg per day of aluminum in his diet. Mr. Heckenlively probably consumes 7-9 mg per day of aluminum in his diet. Perhaps he should start chelating himself. Instead, he’s busily purchasing the woo that Squibb’s selling, such as an infrared heating mat called the Bio-Mat (what a bargain at only $500), and continuing to pay DD for lots more tests, one of which found elevated uranium (!) levels in his daughter. Meanwhile, Mr. Heckenlively soldiers on, moving on to intravenous chelation therapy:

I’ll continue to do the EDTA and glutathione pushes and monitor.  Hopefully, this will make the chelation period much shorter.  If the next couple tests come up with low excretions I’ll be considering that Mark was right and the metal-making bugs have been defeated.  Maybe it will finally be time to consider HBOT, especially if her red blood cells show an increased ability to carry oxygen.

Note that an EDTA push is exactly what killed 5 year old Tariq Abubakar Nadama in 2005.

I found it very painful to read Mr. Heckenlively’s account, as I do try to empathize with him. He has an autistic daughter, and raising such a child is a huge challenge. I don’t know if I could handle such a challenge myself. I also have no doubt that he really and truly wants to help his daughter. Unfortunately, he has no real understanding of science or medicine and that leaves him susceptible to the attraction of the quackery du jour. All I can think of is his poor daughter, who is being subjected to everything from repeated urine tests (which can’t be easy to collect; I wonder if he has to catheterize her to get them) to multiple blood draws and IVs, to lumbar punctures used to inject stem cells directly into her central nervous system via the cerebrospinal fluid. On the other hand, in a way I’m glad he’s so tone deaf and keeps writing these accounts. They are so full of credulity towards outright quackery and so full of pseudoscience that they provide excellent teaching fodder to use to try to show parents who may be contemplating going down the road that Mr. Heckenlively has gone so far down that I fear he can never come back.

Fortunately for us, although not for his daughter, Mr. Heckenlively’s descent into pseudoscience can be used as a perfect example of the mindset that drives not only faith in quackery but the antivaccine movement. His AoA posts are, as they say, “teachable moments.” Just as Mr. Heckenlively is utterly convinced that “toxic metals” and various microbes are somehow responsible for his daughter’s unfortunate condition and will grasp at any straw, no matter how tenuous and no matter how much he has to cherry pick studies and twist science, logic, reason, and even his perception of reality itself to turn scientific evidence against his beliefs into hopeful evidence for them, so, too, the antivaccine movement is so utterly convinced that it absolutely positively has to be The Evil Vaccines that cause autism that it does exactly the same thing. The price of this denial of science is steep indeed, both financially and emotionally. But the ones who truly pay the price of the sort of antiscientific, cultish belief system promoted by AoA, other antivaccine groups, and the “biomedical” movement are the autistic children, who are labeled as “toxic” and needing “detoxification” (i.e., purification) and who are thus subjected to all manner of dubious therapies and outright quackery in a futile attempt to make them “normal” again.

Comments

  1. #1 Chris
    May 14, 2009

    I am shocked that these guys can’t be prosecuted for fraud just like any manufacturer that makes egregiously false claims about its products. What ugly hole in the law protects these clowns?

  2. #2 Landru
    May 14, 2009

    This kind of ignorance and gullibility is just plain sad, for both the child and the parents. It’s really hard to pity parents who are so aggressively and almost (seemingly) willfully stupid, but what possible motive could they have for malice?

    I’m just unable to comprehend how someone can’t understand the total irrelevance of provoked urine samples.

  3. #3 MI Dawn
    May 14, 2009

    That poor child. Can’t someone get her parents for child abuse? I understand the problems of dealing with a severely impaired child are immense. But I can’t imagine treating ANY child as cruelly as this child has been treated. She has been put through more treatments than the sickest cancer patient, or even the English girl, referenced on the other threads, who has declined the heart transplant and has decided to die. Poor Jacqueline can’t make any of those decisions so she has to live, not understanding why her parents abuse her so.

  4. #4 techskeptic
    May 14, 2009

    so much junk. So much. How do you describe this. When debating a creationist there is the Gish Gallop, when they cram so many falsehood and logical fallacies into one paragraph that it become overly onerous to deconstruct.

    What is it in woo land? Heckenlively Hoopla?

    This made me giggle:
    infrared heating mat

    isn’t that just a ‘heating mat’?

  5. #5 LovleAnjel
    May 14, 2009

    Thinking of this man’s poor child and all she has to endure makes me want to cry. I know he wants to ‘cure’ her, but can it really be worth a nearly non-existent quality of life? If medical doctors strapped her down, forced strange ‘medications’ into her spine & bloodstream, stuck her with needles and forcefully withdraw fluid samples, you bet the AoA people would be up in arms about the ‘torture’ of ‘allopathic’ medicine!

  6. #6 Ranson
    May 14, 2009

    I can’t begin to imagine the desperation of that man. I’ll bet he wants nothing more than for his daughter to be “normal”, to be “better” so that she can lead a fulfilling life. If he spent all the time and money wasted on these scams on simply being with her, I’d bet both of them would be happier and healthier.

    Sometimes the world doesn’t work the way we want. Better to accept that and work with it than to cling to false hope.

  7. #7 Squillo
    May 14, 2009

    Heckenlively’s quest to cure his daughter is one of the saddest things I’ve read in a long time. With apologies to my atheist compadres, it makes me glad to be Catholic. I can have hope that there is a very special place in Hell for the folks who take such advantage of a parent’s desperation.

  8. #8 Kenbo
    May 14, 2009

    My heart goes out to this man and his children.

    There will always be snake oil salesmen in our midst, peddling their ineffective and sometimes dangerous wares. I am glad for people like Orac who take the time to shine the light of science and reason on these back-alley profiteers.

    It saddens me when people are so desperate for a “cure” for whatever ails them and theirs that they are willing to cling to anyone and anything that offers even a shred of hope (or just claims to).

    I can’t help but wonder how Doctor’s Data can keep fudging results and stay in business…isn’t there some scientific regulatory agency or body that routinely spot checks/monitors/certifies lab results? This has all the earmarks of a shady mechanic that keeps making up diagnostic results so they can charge for unnecessary parts and labor. Dr. Laidler’s fake urine experiment with DD should have closed them down until they could certify they are providing accurate results.

    Kenbo

  9. #9 MI Dawn
    May 14, 2009

    @Squillo: I am an atheist, but would agree that if I did believe in a Hell, that there would be a very special place for those folks! They are very evil.

  10. #10 wheatdogg
    May 14, 2009

    What are the possibilities that his desperate treatments to “cure” his daughter’s autism may actually be making her condition worse?

  11. #11 Joseph
    May 14, 2009

    The bugs are making metals!

    The claim that anti-vaxers are “educated” needs to be qualified, I think. It means they went to school. It doesn’t mean they actually learned anything.

  12. #12 Calli Arcale
    May 14, 2009

    You can actually collect urine samples from a non-toilet-trained child without a catheter. I know because I have a history of repeat bladder infections, going back to when I was still in diapers. ;-) (I toilet-trained at a normal age, but I got my first urinary tract infection before that. When I was old enough, they did a scan and found that I have a small diverticulum. Enough to cause more UTIs than normal, but not enough to bother correcting surgically.) It’s a nuisance for the parents, though, because it involves cleaning the child really well and then putting a device in the diaper and making a point of changing it the *moment* the kid pees. Of course, if the kid so much as farts, you have to start over. Not a lot of fun, but not as bad as constant catheters, which carry a significant risk of urinary tract infections, which are not fun — and probably hard to detect in an incontinent autistic child until they get bad enough for the kid to get a fever and/or start passing blood.

    What a sad story about Heckenlively. He’s being taken for a ride, and he doesn’t even know it.

  13. #13 Ruth
    May 14, 2009

    Orac, if you had a child with disabilities, you would deal with it, because that is what you had to do. You would not be able to blog as much, but you would use your knowledge to get the best for your child. My background in biochem let me see that the mercury hypothesis was garbage. I read neuroscience to help understand how my child experienced the world. I also became a more compassionate, tolerant person.

    Sadly, this man is treating his child in a way no toxicologist would be allowed to treat a lab rat.

  14. #14 madder
    May 14, 2009

    That poor, baffled girl. Hopefully those questions at the back of Mr. Heckenlively’s mind will eventually become too much for his credulity to bear.

    I only wish Oprah had bothered to see some of these posts before signing Jenny McCarthy up for a deal to produce a daytime talk show.

    What makes you think she didn’t? Oprah believes that parents always know what’s best and that desperation automatically increases the accuracy of their beliefs.

  15. #15 Nostrum
    May 14, 2009

    I know many parents like this. I have an autistic son, and there are many people in the parent community who choose this path of magical thinking. I went to a presentation once for a mother who had done very similar things. She’d had her child scoped, given her chelating agents, put her on crazy diets, stuffed her full of supplements, etc. And she talked about how they “weren’t there yet” but they “were getting there.”

    It made me so sad. That poor little girl. They could have spent the money on settled intervention therapies that they spent on plane trips to New Mexico and rounds of chelation, but I guess it’s easier to sit back and watch Lorenzo’s Oil again. Shhh, don’t tell me how that story really ends.

  16. #16 Skeptico
    May 14, 2009

    The bugs are making metals!

    They should probably make a vaccine against those bugs.

  17. #17 Mu
    May 14, 2009

    Sadly, this man is treating his child in a way no toxicologist would be allowed to treat a lab rat.

    This is what I don’t understand, that all this guy is doing to his daughter is legal. Somewhere this country went the wrong way when it became illegal to settle your hyperactive kid with a quick slap, but absolutely acceptable to zombify it with drugs.
    I really don’t want to know what years of chelation have done to her bones, and how much of her seizures are due to a grossly out of balance electrolyte panel.
    I presume the Mark he keeps mentioning is Mark Geiger of “let’s castrate them all with Lupron” fame?

  18. #18 ababa
    May 14, 2009

    It is utterly amazing the lengths that some people will go to to blame vaccines. I guess they feel as if it was one thing they can blame on their doctors so it relieves them of responsibility.

    His autistic children have innumerable things in common right down to their own genetic structure – yet he has narrowed it down to vaccination! How convenient. Too bad Kent seems to be aware of the avalanche of children that are completely unvaxed yet still autistic that they can’t explain and are being pushed behind the curtain.

    I’ve seen this type of thing in my local forums, parents that go to a DAN! doctor and get back a metals test that is high in mercury/aluminum/whatever every single time, without fail. They are always shocked. The thing that shocks me is that they haven’t figured out the pattern here, much like Kent.

    You. Will. Always. Get. High. Metal. Results. So. They. Can. Sell. You. Treatments.

  19. #19 Calli Arcale
    May 14, 2009

    Being shocked by high levels in a provoked urine test is like being shocked by all the dust on the little circular filter that the vacuum salesman shows you to demonstrate how much better his vacuum cleaner does than the one you’ve already got.

    It’s a sales ploy, nothing more. It works for vacuum cleaner salesmen. It works for water filter salesmen too, who use similarly meaningless gimmicks to wow their marks. There’s no reason it shouldn’t work on the parents of autistic children either — but there’s certainly plenty of reason why it should be illegal for them to use this sort of a ploy when it comes to medicine. It’s never honest, but at least with a vacuum cleaner, the worst that happens is you overspend. Medical woo can kill.

  20. #20 Paul Browne
    May 14, 2009

    It’s hard to believe that what this man is doing to his daughter is allowed. It’s bad enough when parents or children to refuse treatment, particularly invasive treatment, that has a good chance of successfully treating their disease but Kent Heckenlively is subjecting his daughter to repeated invasive, in some cases very invasive, treatments that carry a significant risk and none of which are supported by any real scientific or clinical data.

    Do you not have something similar to social services in the US that could intervene?

  21. #21 ctenotrish
    May 14, 2009

    That poor poor child. I wonder if she has ever been evaluated by a competent medical geneticist? Autistic behavior and seizures . . . even if there aren’t any even mildly dysmporphic features she’d likely be an appropriate candidate for array CGH studies. So sad.

  22. #22 Kimbo Jones
    May 14, 2009

    One of the worst things about these sorts of parents is that they seem unwilling or unable to accept their children as they are within the context of caring for their needs. They seem more interested in changing them to make them more “normal” and when that inevitably fails, they continue to see their child as “broken”, to be fixed with any tool available.

    This attitude is profoundly dehumanizing to autistic people. All of the time spent with these misguided attempts to fix their kids is time not spent getting to know them. It’s also a diversion from available effective resources.

  23. #23 DLC
    May 14, 2009

    I feel for the child. chelated how many times now?
    I wonder if Daddy would like to be held down, jabbed with a needle and then feel the fun of an IV push into the arm multiple times. I’ll volunteer to hold him down if one of you wants to insert the needle. could we have a nice large bore needle ?

  24. #24 Alan Kellogg
    May 14, 2009

    We would do autists a lot of good were we to stop speaking of autism as having a cause. Autism doesn’t have a cause. Not a cause that can be addressed and the results corrected. Autism as far as I can tell is caused by differences in fetal brain development, taking expression in different ways depending on how development took place. My autism is the result of events that happened during gestation, and most likely thanks to genes I inherited from my father and how they were expressed during neural development. By saying that autism is caused by something that occurs during early childhood we are telling people they may have done something wrong, and that there is something they could do about it. Both of which are lies.

    It is through those lies we instill false guilt and false hope in the minds of autists and the parents of autists. By saying here is the addressable cause, we are further saying it is something that must be addressed and corrected when there is really nothing to be done.

    There is really nothing to be done for autists, other than teaching them how to deal with the difficulties that come with autism according to their ability. Obviously a high functioning autist (like me) can do more than a low functioning autist, but all but the most disfunctional autistic can still develop coping skills.

    What you, the mundane, need to do is to learn to accept us, the autist, as people who are different. People who are disabled in your society by our differences, but who are not diseased in any sense. People who are normal according to the way our brains developed in the womb, but abnormal according to the way your brains developed. People who are different, and who need help adjusting to the way you do things.

    And yes, there are times when I have to ask myself when I experience the outcome of a mundane disfunction, “What is wrong with you people?”

  25. #25 Blake Stacey
    May 14, 2009

    Wait just a minute! If bacteria can make metals — no doubt by manipulating the vibrations of the quantum wavefunction of the organic molecules they ingest — then maybe this is how Morgellons syndrome can turn organic matter into calcium, chromium and silver. Quick, get Stockholm on the line!

  26. #26 Ktesibios
    May 14, 2009

    I have a question: aren’t labs doing biomedical tests for diagnostic purposes subject to any licensing requirements that include demonstrating competence?

    You can’t sell medical, dental, legal, accounting or engineering services to the public without being licensed- a process that involves meeting requirements for education and experience as well as passing a rigorous examination.

    Heck, if you want to be a driving instructor (at least in the state where I learned) you have to be specially licensed and be retested regularly and your teaching vehicle must be state inspected more often than ordinary passenger vehicles.

    So how the heck is a lab that can’t even get a simple negative control test right allowed to sell what are essentially medical services directly to the public? Is some state regulatory agency in serious need of a liter of Jolt cola and a good swift kick in the pants?

  27. #27 Mu
    May 14, 2009

    They are not selling directly to the public, formally all samples are treated on request of a health care practitioner. As for the reliability of the results, if someone would complain to the licensing authorities they might get audited. In which case they might get a slap on the wrist for out of date calibration etc, but it’s very hard to prove actual fraud. As in the case above with the “fake, mercury free” urine sample, you can get into an argument that their testing was skewed by the fake urine, so they got the wrong result.
    A lot of clinical tests are very method depending (why they tell you to not eat or drink), so it’s hard to nail them down for bad results.

  28. #28 Sarah P
    May 14, 2009

    If they can get the bugs to make gold, they can become alchemists!

    That poor, poor kid.

  29. #29 wfjag
    May 14, 2009

    “Doctors Data was tested by Dr. Laidler in a way that any parent could do, almost. Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

    He sent it to DD and got back 2 different results and both high in mercury.”

    Sounds like a classic case of lab equipment contamination. IF the equipment is not regularly and thoroughly cleaned, AND then calibrated using blank samples, that almost always is the result.

    As there appear to be no regulatory agencies requiring the DD provide acceptable results, and as their “results” would never be admitted as evidence in a law suit, but, instead, the “results” are being sent to providers who have a financial interest in continued “abnormally high” results for “toxic metals” (to justify additional chelation “treatments”), and parents who believe that autism’s basis is vaccines or “toxic metals” and not genetic (i.e., that the parents are the source), there is no reason for DD to change its practices.

    Rather, every time it reports abnormally high results for toxic metals, it ensures repeat business, since that leads to another round of chelation and testing.

    Ironic, isn’t it, that so many anti-vaxers can’t see the obvious financial incentive for DD and providers who do chelation? However, they are always quick to point to any financial connection of any researcher (who disputes their conclusions) may have with any pharma company — howsoever tenuous the connection, or whether the allegation is based on highly dubious evidence or even based on pure speculation.

  30. #30 catgirl
    May 14, 2009

    What are the possibilities that his desperate treatments to “cure” his daughter’s autism may actually be making her condition worse?

    I have often wondered about this. Even if the autism and seizure symptoms are completely unrelated to this treatment, making the kid uncomfortable so often would like exacerbate any behavioral symptoms. What kid wouldn’t be uncooperative if you tried to put them through all of this?

  31. #31 rob
    May 14, 2009

    i don’t know. maybe the bugs are using alchemy seems plausible. but isn’t is more likely that the bugs are creating heavy elements via nucleosynthesis? it’s obvious that the bugs have been intelligently designed to utilize cold fusion to create the heavy metal toxins. they probably have those irreducibly complex rotary flagella thingies.

    anyway, we shouldn’t create a vaccine against the bugs, we should study them, and create a strain that can synthesize gold. then we can inject them into geese and all be rich! rich i tell ya! RICH!!! bwahahahahahaha.

    plus, think of all the pate fois gros!

  32. #32 catgirl
    May 14, 2009

    So just to get this straight, according to Heckenlively:

    life-saving vaccines with low risk of side effects injected into the bloodstream or muscle tissue = bad

    dubious stem cells from a country with loose regulations injected directly into spinal fluid = good

  33. #33 khan
    May 14, 2009

    I mean, really. This is utter and complete nonsense from a scientific standpoint. Bacteria can’t “make” metals. They can only consume and excrete them, unchanged. For bacteria to “make” metals, they would somehow have to be able to transmute other elements into mercury, lead, or the other metals in DD’s panel. The ignorance of this basic fact is so astounding that it’s frightening to think that Mr. Heckenlively is a science teacher.

    Sounds a bit like ‘cold fusion’.

  34. #34 desiree
    May 14, 2009

    oh how sad. i hope her life is better than he makes it sound, and i hope there are people in it that love her for who she is.

  35. #35 SiMPel MYnd
    May 14, 2009

    The bugs are making metals!

    They should probably make a vaccine against those bugs.

    Skeptico: I wish you wouldn’t post things like this while I still have hot coffee. It really hurts passing through my nose and cleaning the computer screen is a real bitch…

  36. #36 Doazic
    May 14, 2009

    Hey Orac, you should read up on Marijuana for Autism; make for a good post.

  37. #37 Pablo
    May 14, 2009

    After all, he’s done over 50 of them and keeps meticulous graphs,

    Well, with the doctor’s help that is…

  38. #38 Prometheus
    May 14, 2009

    You can’t make this stuff up. Mr. Heckenlively gets it wrong from beginning to end. May favorite is:

    “I swear, we’re not feeding her aluminum!”

    For starters, Mr. Heckenlively can’t be much of a science teacher if he doesn’t know that aluminum is one of the most abundant metals on the surface of this planet. He need look no further than his refrigerator or water tap for the source of his daughter’s aluminum. In fact, he is feeding his daughter aluminum with every bite of food and every drink of water.

    Mr. Heckenlively further exposes his lack of science knowledge when he states:

    “Mark’s theory ["The bugs are making metals!"] was fairly easy to grasp, even if it went far beyond what’s currently accepted in scientific thinking.”

    “Mark’s theory” (hypothesis, really, and not a good one) was not beyond “…what’s currently accepted in scientific thinking…”, it’s actually behind current scientific thinking.

    The idea of transmutation of elements is very old and was finally proved impossible just in time for nuclear physics to show that transmutation can occur – it just takes a lot of high energy neutrons.

    Here is where I get confused. We microbiologists know that bacteria are capable of fission (binary fission), but that would only result in elements lighter than the ones they started with. They couldn’t make mercury (Z=80) or even arsenic (Z=33) from aluminum (Z=13).

    For bacteria to make mercury (or uranium) from aluminum would require that they be able to carry out fusion. If this were true, we should be able to detect significant numbers of neutrons, enough that Mr. Heckenlively’s daughter would show signs of radiation sickness.

    But, seriously – is Mr. Heckenlively so desperate and so gullible that he really thinks that bacteria are making mercury out of aluminum? Or even iron? If so, the school where he teaches may want to review his contract.

    Prometheus

  39. #39 Rjaye
    May 14, 2009

    What Allan Kellogg said-in spades.

    And what others have said as well. If only he had accepted the situation, and spent his time with his family, accepting them for who they were, and helping them deal with the world with the abilities they had, maybe he would be happier, and everyone would be living a life, instead of keeping it on hold.

    It sounds like this man is almost to the point of going “what the hell am I doing,” and I hope it’s sooner than later for himself, his daughter, and his family.

  40. #40 tsig
    May 14, 2009

    He seems to regard his daughter very impersonally. It’s like he only sees her as a disease not as a human.

  41. #41 notmercury
    May 14, 2009

    Mr. Heckenlively will tell you that he loves his daughter very, very much and that is why he is trying anything and everything to help her. The truth is, Kent is in love with an image of his daughter that exists only in his mind. A daughter that was taken from him by toxic vaccines.

    Any amount of risk is acceptable once you start thinking like this. To Kent, it’s no different than high dose chemo therapy and radiation if that’s what a child needs to recover from cancer.

    If Kent could stop all of the chelation and quackery for a a few months I think he’d be amazed to see how well his daughter does without them. If he could try to show her that he loves her, autistic or not, he might see a happier child. Unfortunately Kent can’t risk a single day of chasing cures to see that his daughter is not a disease.

  42. #42 kathleen
    May 14, 2009

    Mr. Heckenlively needs to have the vast pool of toxic lunacy drained from his head

  43. #43 kathleen
    May 14, 2009

    Mr. Heckenlively needs to have the vast pool of toxic lunacy drained from his head

  44. #44 Matthew Cline
    May 14, 2009

    As in the case above with the “fake, mercury free” urine sample, you can get into an argument that their testing was skewed by the fake urine, so they got the wrong result.

    But if neither sample had any mercury any at all in it, how could it being fake lead to a false positive? Do the tests require urea to work properly?

  45. #45 MrMarcus
    May 14, 2009

    It’s easy to laugh at Mr Hickenlively but I think his story is just sad. He’s been given a false hope, and invested so much time and money in this hope that there’s no way back. People wonder why he keeps going further into the Twilight Zone…he HAS to. He HAS to keep persuing path of ever-increasing quackery and nuttiness. He HAS to believe this stuff works.

    To turn around now and start questioning his beliefs would bring his entire world crashing down. The shattering of his hopes for his daughter, and the realisation that he’s been taken for a sucker by snake-oil. He’d have to face up to the fact that he’s actually done his daughter much more harm than good, and wasted 7 years and God know’s how much money doing so.

    Who could really face up to something like that?

  46. #46 Jacob V
    May 14, 2009

    So why don’t any of these magical bugs make GOLD!!!

  47. #47 Bink
    May 14, 2009

    I have a friend who got suckered in for years by the biomed BS of a famous DAN practitioner. She eventually realized that she had been wrong and told people that she had made grave errors. I admire her for that. She’s a good mother and a good and decent person. It’s possible to face one’s mistakes and to move on with a heavy but honest heart. Her child is doing so much better now, too.

  48. #48 Alan Kellogg
    May 14, 2009

    Khan, #33

    Cold Fusion has fuck all to do with it.

  49. #49 Shay
    May 14, 2009

    Maybe I missed something, but where is this child’s mother and why hasn’t she taken a baseball bat to this guy’s head yet?

  50. #50 Paul Murray
    May 14, 2009

    It’s hard, hard, hard to admit that you have been grossly wrong about something important to you.

    Mr. Heckenlively may never be able to.

  51. #51 Paul Murray
    May 15, 2009

    He seems to regard his daughter very impersonally. It’s like he only sees her as a disease not as a human.

    Headsmack! My God – isn’t it obvious? He can’t see his daughter as human, he obsessively keeps lists and numbers and graphs, he meticulously weighs his daughter’s poo and doesn’t seem to realise how weird it is (her trouble is kind of at the other end, you know?). Trying to reduce the complexity of the world, running around in little mental circles.

    It’s genetic, you know. Autism. Runs in families.

  52. #52 Zar
    May 15, 2009

    He sounds like a dark-age dad trying to get rid of a Changeling. He’ll bring his REAL daughter back by horribly torturing the changeling child.

  53. #54 DebinOz
    May 15, 2009

    I honestly can’t comprehend the mindset of a parent, after demanding a number of invasive procedures being inflicted on your child to no effect, STILL pursuing the same course! They are not jump-starting a car here.

    Disgusting!

  54. #55 sophia8
    May 15, 2009

    @Paul Murray: An obsession with numbers, ordering, and measuring is an autism trait; Mr Heckenlivley appears to be inadvertently proving the genetics theory.
    @Zar: I’ve often wondered if the old European Changling myths – how the fairies sneak in at night and swap human babies with fairy children – were attempts to explain autism. Heckenlively seems to be developing full-blown symptoms of that kind of magical thinking. What’s he going to try next, when the chelation doesn’t work – exorcism?

  55. #56 Citizen Deux
    May 15, 2009

    Staggering to read. This synopsis should be handed with every diagnosis of ASD. The passion of a parent’s love for their children and the image reflected back upon them can easily be twisted into this dark obsession.

    When his revelation comes, let’s hope it’s not at the graveside of his daughter.

    BTW – 11yo and still in diapers? She must be severely affected.

  56. #57 rrt
    May 15, 2009

    I suspect that if you could pin heckenlively down long enough to drive the environmental aluminum and nucleosynthesis points into his skull, he’d just move the goalposts. I think he’d claim “well of course I know they’re not MAKING the metals…that would be silly…what I mean is…um…that they’re accumulating the metals and chemically stripping them of whatever they’re bound to so they can be more toxic. Yeah, that’s the ticket!”

    So while I suspect he probably really was being that dense with his conclusion, I also suspect that revealing his idiocy to him wouldn’t faze him as there’s a far more plausible (or at least physically POSSIBLE) position for him to retreat to…without even having to admit he retreated at all.

  57. #58 sophia8
    May 15, 2009

    @Citizen Deux: Incontinence isn’t part of autism; neither is epileptic siezures. My guess is that the child has neurological damage or a metabolic disorder that includes certain symptoms of autism.

  58. #59 MarkH
    May 15, 2009

    What’s worse is the injection of stem cells into the brain is associated with subsequent tumor development from the implanted cells. That’s a dangerous, untested therapy that is simply a terrible idea.

    This is worse than bad parenting, the child may need to become a ward of the state to avoid further human experimentation on a nonconsenting minor. If this were done by anyone but a parent, it would be the worst kind of violation of international conventions on human experimentation.

  59. #60 Anthro
    May 15, 2009

    There’s a lot said here about the sad case of the daughter, but I’m curious as to what’s behind the “cure” accorded to the son (and to Jenny’s son, et. al.). I’m assuming that these “cured” children don’t really have autism, or that it is so mild that most any intervention would bring some progress, real or perceived. But maybe these parents are as deluded about the “progress” of the “disease” as they are about the “cure”?

    Another question, especially to Orac (as he’s a physician) is what does he make of the doctors who go along with all this and enable these “tests” to be done? What can be done about it? Are they not violating some kind of ethic?

  60. #61 Prometheus
    May 15, 2009

    Anthro asks:

    I’m assuming that these “cured” children don’t really have autism, or that it is so mild that most any intervention would bring some progress, real or perceived. But maybe these parents are as deluded about the “progress” of the “disease” as they are about the “cure”?

    From what I’ve seen of the “cured” or “recovered” children, I can’t say that I’m terribly impressed. We have a number of “biomed” parents in our community and I’ve noticed that they tend to see more “recovery” in their children than I do.

    Of course, a good part of the “recovery” the parents see is the child getting older. The “biomed” promoters have sold the lie that autistic children do not develop – at all – without some sort of “intervention”. This is simply not true. Autism – as I’ve said more times than I care to remember – is a syndrome of developmental delay, not developmental stasis.

    There is just now some data coming out that shows – as developmental pediatricians have long observed – that autistic children “improve” without any treatment at all because they are continuing to develop.

    This development is likely to be slower than a “typical” child’s and may have areas of deficit, but nobody (apart from those making a profit on “biomedical” interventions for autism) can claim that a child diagnosed with autism at age three will remain at that level or stage of development through their life without intervention.

    Another part of the “recovery” story is wishful thinking and selective observation. Many of the parents who have publicly shown video of their “recovered” children are miffed when news cameras fail to show their child in the same favorable light. And just as video can be edited to show only the best and most “typical” behaviors, so can memory.

    I’m not claiming that the parents of “recovered” children are lying – it’s just that their recollection of events is at odds with those of independent observers. That is the nature of human memory, unfortunately. We often remember only what fits into our world-view; the rest is conveniently forgotten.

    Many of the anti-autism advocacy groups claim that there are “thousands” of “recovered” children. Many of them predict that the public will soon be astounded at these “recovered” children. We have been promised that these thousands (or tens of thousands) of “recovered” children will be unveiled any day now. I’ve been waiting for about four years for this “imminent” event.

    I’ll believe it when I see it.

    Prometheus

  61. #62 Ellard
    May 15, 2009

    Excellent post. Teachable moments indeed. I was glad to hear you sound a more empathetic note for Mr. Heckenlively as his desperation is really disturbing. I have empathy for him and his daughter which you share. Unfortunately, the powers of denial of the human mind are strong and not easily broken by logic many times.

  62. #63 ababa
    May 15, 2009

    Prometheus said: I’m not claiming that the parents of “recovered” children are lying – it’s just that their recollection of events is at odds with those of independent observers. That is the nature of human memory, unfortunately. We often remember only what fits into our world-view; the rest is conveniently forgotten.

    This is demonstrated quite well by the Cedillo family and their case in the Omnibus hearings. There recollections of their child’s onset of symptoms was completely discredited when an expert viewed their own evidence. She displayed many classic symptoms on the video tapes pre-vaccination they had provided to show how normal she was prior. They weren’t lying, it is just that their own recollections were at odds with reality. I was surprised that their lawyer didn’t have an autism expert edit the tapes prior to submission for potential “red flags”.

  63. #64 Kemist
    May 15, 2009

    Mark’s theory was fairly easy to grasp, even if it went far beyond what’s currently accepted in scientific thinking.

    Uh, no. It actually goes far behind current scientific thinking.

    If an actual engineer ever spawned such a stupid idea, even doodling on toilet paper while he was both drunk and totally stone, I’d make sure he didn’t build anything I or my loved ones use.

    And if I was an engineer I’d be pissed to be associated, even vaguely, with such stupidity.

  64. #65 Kemist
    May 15, 2009

    it’s frightening to think that Mr. Heckenlively is a science teacher.

    uh, whaaa ? You’re surely kidding. If that guy can teach science in the US, you have very big problems. He wouldn’t have been able to obtain a high school diploma, even a basic level one, here.

  65. #66 Kemist
    May 16, 2009

    But if neither sample had any mercury any at all in it, how could it being fake lead to a false positive? Do the tests require urea to work properly?

    Depends on the detection method and general protocol. Urea might be interfering with detection, and be corrected for in the method.

    Testing methods are very sample-type dependant. Detecting mercury in, say, whole blood, is very different from mercury in maple syrup. It’s even different from detecting mercury in blood plasma only.

    There are different possible interfering substances in each case, which demand different sample preparations, each method with its own sources of possible contamination (the reagents that you use in sample preparation, even the stupid pipet tips, filter paper and glassware).

    Real analytical chemistry labs have to validate every step of the testing process for every analyte (the chemical you’re testing for) and every sample type. Ideally, they are periodically tested with standardized samples from outside. Validated testing protocols are archived in databanks, some of which are public. It’s a very meticulous (and quite boring to me, for the little I’ve done) and procedure-oriented work.

    That’s why we in chemistry often say of analytical chemists that they’re, well, anal.

  66. #67 Joseph
    May 16, 2009

    Many of the parents who have publicly shown video of their “recovered” children are miffed when news cameras fail to show their child in the same favorable light.

    I found a couple videos of teens who are claimed to be recovered.

  67. #68 Rachel
    May 16, 2009

    Skeptico, thankyou for the comment:

    The bugs are making metals!

    They should probably make a vaccine against those bugs.

    Posted by: Skeptico | May 14, 2009 10:37 AM
    It gave me a laugh in an otherwise autracious and heartbreaking story. My son suffers with ADHD and I have considered natural remedies for him. The brakes on that thought? I see a tremendous difference in my son’s level of functionality with medicinal therapy. I fail to understand how any reponsible parent could move past the stage of consideration concerning these non-traditional, un-proven methods. Grasping at straws is normal, even expected; trying to build a home and live on that straw is an entirely seperate ideal, and causes concern for the psychological health of any parent who clings to it. On another note, I am a 28 year old mother and this is my first experience with ADHD; any knowledge in this area would be readily accepted and considered. No chelation treatments or stem-cell therapy, please! Zenithea7773@yahoo.com

  68. #69 Laura
    May 16, 2009

    How terribly sad. Tragic, really.

  69. #70 Grendel
    May 18, 2009

    Sophia8,

    I am the father of an Autistic child, and I also work in the disability sector so I get to see a lot of other families with children who have disabilities.

    The ‘Autism Spectrum’ is well named, the sheer range of effects on the lives of the individual and on families alone is deserving of the broad categorization as a ‘spectrum’.

    People who have Autism have a higher prevalence of epilepsy – and often this develops later in life – usually prior to adulthood. I’d suggest Mr. Heckenlively’s daughter may well be one of these children. That is not to say that epilepsy is ‘part’ of autism, merely that it is a co-morbidity.

    A second common co-morbidity is intellectual disability although one disability has often masked the other making diagnosis difficult and leading, on occasion, to people being diagnosed with either autism or ID when in reality they have both.

    As expertise in diagnosis has increased, we are finding that many clients that we have in our care as having ‘intellectual disability’ (often older clients) also at some point receive a secondary diagnosis of autism. They also respond well to behavioral therapies, even if not provided as early as we might prefer.

    Around 40% of people with ID also have a pervasive developmental disorder ‘on the spectrum’. Around 70% of people who have a pervasive developmental disorder also have intellectual disability.

    It is entirely possible therefore that Mr. Heckenlively’s daughter has autism, intellectual disability and epilepsy and in fact that trifecta is all to common among people with autism. The symptoms she is described as having would certainly fit within that arena – although they might also be indicative of a range of other conditions.

    I have a great deal of empathy for Mr. Heckenlively’s daughter, but honestly wish that he’d figure out that he’s doing a double level of harm but not trying what is known to work in addressing some of the developmental deficits while at the same time causing substantial physical suffering to his child.

    Quackery indeed.

  70. #71 _Arthur
    May 27, 2009

    “I was surprised that their lawyer didn’t have an autism expert edit the tapes prior to submission.”

    Actually, their Autism Omnibus lawyers fought hard to keep the pre-vaccination Cedillo family tapes from the evidence. They lost. And, as it turned out, lost big.

  71. #72 _Arthur
    May 27, 2009

    “I was surprised that their lawyer didn’t have an autism expert edit the tapes prior to submission.”

    Actually, their Autism Omnibus lawyers fought hard to keep the pre-vaccination Cedillo family tapes from the evidence. They lost. And, as it turned out, lost big.